Scar tissue in throat caused by radiation and chemo treatment

Posted by keith123 @keith123, Jan 22, 2019

Is there anything done to remove scar tissue so you can eat?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Profile picture for kris ohlson @krisohlson

I don't know if I have scar tissue. I was treated with radiation for melanoma at the base of my tongue in 2010. I had surgery for cancer at the underside of my tongue and soft palate in 2020 at OHSU. After that, the following years I was getting periodic fevers due to food aspiration. Since 2023 I have been on a feeding tube. No food or water orally. In December 2023 I had a swallowing, but it was cut short when the first swallow I did when down my lungs. OHSU said that there was nothing that could been done and that I would been on a feeding tube the rest of my life and my condition was guarded. The doctors their said that they have seen this before due to amount of radiation received in my first cancer treatment. I see an ENT at least every year to scope my throat. Any recommendations on who to see?

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@krisohlson
After my husband’s 2nd round of chemo and radiation for head and neck cancer, he had lost the ability to swallow very well. His surgeon then did a throat dilation and it did help. Then did it as an outpatient surgery and it is a very short procedure. He also had a swallow test that showed a very limited opening.
Could you get a consultation with someone at the cancer center in Seattle?

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Profile picture for Colleen Young, Connect Director @colleenyoung

Hi @keith123 and welcome to Connect. I've added your message to the Head & Neck Cancer group (https://connect.mayoclinic.org/group/head-neck-cancer/) so that you can meet others who know first hand about scar tissue in the throat caused by cancer treatments. Members like @alpaca @karly @skoshi @jimchardy @wayno1234 and others know first hand how the treatments and scar tissue make eating such a challenge.

While we wait for other members to join the discussion, here are some other discussions you might be interested in as well:

* Soft Food Suggestions https://connect.mayoclinic.org/discussion/soft-food-suggestions/
* Esophageal cancer….transitioning to food https://connect.mayoclinic.org/discussion/esophageal-cancer-transitioning-to-food/
* Life after head and neck cancer treatment https://connect.mayoclinic.org/discussion/life-after-head-and-neck-cancer-treatment/

Keith, we look forward to getting to know you. What type of cancer did you have? Did you have a feeding tube?

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@colleenyoungesophageal cancer and yes I had a jtube for 8 weeks after ivor Lewis surgery

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I’m getting an iron infusion every four weeks and it makes me so sick for 3days after infusion.

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Profile picture for cskippy @cskippy

Goodmorning, I have appointment in Portland OR. to see where i'm at with everything...was going to speech therapy but the hospital decide to close/ make cuts and that was on of the departments. 🙁 Looking around still doing exercise at home. In my past post my doctors are very confused why this is happening after 9 or so years. Our daughter lives in Dover Minnesota. Are you talking about Rochester's Mayo/ St. Mary's ? Have a happy day 🙂

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Hello @cskippy. Yes, Mayo Clinic in Rochester MN is also where I have had all my cancer care. They have a great laryngeal team and my head and neck medical oncologist there Dr. Katharine Price is my hero. We live 2 hours from Cleveland Clinic but drive 10 hours to Mayo for the quality of care. Nothing against CC, but at the time 14 years ago, Mayo was ranked higher than CC for ENT care. I had already requested a referral to the University of Michigan 1 hour away and that is how I got my initial diagnosis. I firmly believe that it pays to travel for your health care if your choices are limited locally. I don't think I would be still alive if I had continued on at UM in stead of Mayo. Perhaps dead from the unbelievable frustration with their scheduling system in addition to the cancer? Are you considering Mayo MN with your daughter so close by?

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I live in Oregon. I have been treated at the Oregon Health & Science University (OHSU) Portland. Oral & Maxillofacial Surgery unit removed my second cancer in 2020 from my tongue & soft Platte and installed a skin graph. I cannot swallow due to the first cancer in 2010 where radiation was used to treat it at the base of my tongue and throat. OHSU stated that they have seen this many times and that I would be a feeding tube for the rest of my life.

Where should I go for a second opinion on my swallowing evaluation? Stanford in SF?

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Profile picture for terrycleckler @terrycleckler

@colleenyoungesophageal cancer and yes I had a jtube for 8 weeks after ivor Lewis surgery

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@terrycleckler, I encourage you to join the esophageal cancer discussion over here:
- Esophageal Cancer support group https://connect.mayoclinic.org/group/esophageal-cancer/

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Profile picture for kris ohlson @krisohlson

I live in Oregon. I have been treated at the Oregon Health & Science University (OHSU) Portland. Oral & Maxillofacial Surgery unit removed my second cancer in 2020 from my tongue & soft Platte and installed a skin graph. I cannot swallow due to the first cancer in 2010 where radiation was used to treat it at the base of my tongue and throat. OHSU stated that they have seen this many times and that I would be a feeding tube for the rest of my life.

Where should I go for a second opinion on my swallowing evaluation? Stanford in SF?

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@krisohlson when I was starting my search for care I used the US News and World Report website for best hospitals for comparison. I liked the criteria used in their rankings. I see Stanford highly rated in both cancer care and ENT so that may be a good choice. Check out those rankings and see what you think.
https://health.usnews.com/best-hospitals/rankings/cancer

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Thank You very much for your reply.

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My husband had base of tongue surgery and radiation 20 years ago at UCLA and had a Jtube for 4 months. It took about 2 years before he could eat “ok” . Cancer returned 2025 and he had surgery Base of tongue but it did not get all of it. He is currently on Keytruda.
The scar tissue is making his swallowing worse again but treatment at Fred Hutch Seattle and we are moving to AZ so changing to Mayo gives us great confidence…we had one meet and recommendations are already being made.
You most definitely have to travel to find the best care and research hospitals have saved my husbands life for sure…

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